OT trisomy 18

Anyone have Any experience with trisomy 18? My close friend just gave birth to a baby girl with it. She was considered high risk for it during her pregnancy, but expected a normal baby. They got the diagnosis a few days after birth. I did some research and most babies don't survive the condition for long- yes some get years, but most get days, weeks, or a few months with their babies. My friend is taking her baby home in a few days though. they have her off oxygen and actually drinking SOME breast milk from a bottle, the rest through the feeding tube. She has a cleft palate and other outward signs like low set ears, very low weight, strawberry-shaped head, etc. my friend is excited to take her home and get her into a routine. I don't know how to take all this because all my friend tells me is upbeat, positive updates on the baby as if she were perfectly healthy or normal but I keep reading that most babies eventually pass... It's just a matter of when. I've cried so much over this and I feel for their families, but the parents seem nothing but happy! My friend said she is happy and blessed. Their outlook is so impressive. I'm just confused. I pray that my friend is not going to have to see her baby get its angel wings!!

Anyone have Any experience with trisomy 18? My close friend just gave birth to a baby girl with it. She was considered high risk for it during her pregnancy, but expected a normal baby. They got the diagnosis a few days after birth. I did some research and most babies don't survive the condition for long- yes some get years, but most get days, weeks, or a few months with their babies. My friend is taking her baby home in a few days though. they have her off oxygen and actually drinking SOME breast milk from a bottle, the rest through the feeding tube. She has a cleft palate and other outward signs like low set ears, very low weight, strawberry-shaped head, etc. my friend is excited to take her home and get her into a routine. I don't know how to take all this because all my friend tells me is upbeat, positive updates on the baby as if she were perfectly healthy or normal but I keep reading that most babies eventually pass... It's just a matter of when. I've cried so much over this and I feel for their families, but the parents seem nothing but happy! My friend said she is happy and blessed. Their outlook is so impressive. I'm just confused. I pray that my friend is not going to have to see her baby get its angel wings!!

I think your friend has a great outlook. If I knew that there was a possibility that I might only be granted a few sorts days,months or years with my baby I would take every opportunity to be happy about. I'm sure she knows the possible outcomes but instead of ruining her time with baby or being negative about the situation she is taking the high road.

I think your friend has a great outlook. If I knew that there was a possibility that I might only be granted a few sorts days,months or years with my baby I would take every opportunity to be happy about. I'm sure she knows the possible outcomes but instead of ruining her time with baby or being negative about the situation she is taking the high road.

I think it would be devastating to learn my baby has Trisomy 18, and it sounds like you would feel much the same way I would. Everyone reacts differently to learning that their baby isn't the "normal" or healthy baby we all hope for, and it's ok to take this news differently than your friend is taking the news. But in this case, you should probably follow your friend's lead and focus on the positives when you are with your friend. Your friend may be a little in denial, and hoping that her baby will "beat the odds" or that the diagnosis is somehow wrong... or they may actually understand the reality that many parents of Trisomy 18 babies don't even get the chance to take their LO home and as the PP said, they really are trying to focus on the miracle of getting a chance to meet their baby and getting time to spend with her. Just be prepared to be there to support her if and when the baby has a medical scare (many Trisomy 18 babies have multiple health issues and sometimes multiple surgeries, even if they are healthy enough to survive past the first year).

I think it would be devastating to learn my baby has Trisomy 18, and it sounds like you would feel much the same way I would. Everyone reacts differently to learning that their baby isn't the "normal" or healthy baby we all hope for, and it's ok to take this news differently than your friend is taking the news. But in this case, you should probably follow your friend's lead and focus on the positives when you are with your friend. Your friend may be a little in denial, and hoping that her baby will "beat the odds" or that the diagnosis is somehow wrong... or they may actually understand the reality that many parents of Trisomy 18 babies don't even get the chance to take their LO home and as the PP said, they really are trying to focus on the miracle of getting a chance to meet their baby and getting time to spend with her. Just be prepared to be there to support her if and when the baby has a medical scare (many Trisomy 18 babies have multiple health issues and sometimes multiple surgeries, even if they are healthy enough to survive past the first year).

I have a family friend who found out at her 20 week ultrasound that her baby wouldn't live longer than a few hours after birth. She and her husband had a similar attitude as your friend. They hoped for the best, but treasured each and every moment with their son. Every movement he made and every ache and pain during pregnancy was something that she was grateful for. Her son only lived about 3 hours, but they just held him and loved on him for those hours. They were happy for any time that they spent with him, and maybe that's the attitude your friend has.

I have a family friend who found out at her 20 week ultrasound that her baby wouldn't live longer than a few hours after birth. She and her husband had a similar attitude as your friend. They hoped for the best, but treasured each and every moment with their son. Every movement he made and every ache and pain during pregnancy was something that she was grateful for. Her son only lived about 3 hours, but they just held him and loved on him for those hours. They were happy for any time that they spent with him, and maybe that's the attitude your friend has.

Thank you so much. Sunflower you said what I was trying to say an couldn't figure out. She may be a little in denial but its beautiful that she is able to cherish each small victory with her baby, regardless of the outcome. I guess I know I would be handling it differently and it's hard to understand her when she talks to me as if the baby is perfectly normal. But what everyone said here makes a lot of sense.

Thank you so much. Sunflower you said what I was trying to say an couldn't figure out. She may be a little in denial but its beautiful that she is able to cherish each small victory with her baby, regardless of the outcome. I guess I know I would be handling it differently and it's hard to understand her when she talks to me as if the baby is perfectly normal. But what everyone said here makes a lot of sense.

i had a situation that is too painful at the moment to disscuss... but a friend gave me the following story that i have found comfort in.

welcome to holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

for me... this story is sad.. but so very true.

good luck with ur friend... im guessing she will have roller coaster of emotions. hang in there with her. be her friend. she will remember you for ever if you r patient. you will do good. i will b thinking of you and your friends baby

im very very very very sorry to hear of your friend.

i had a situation that is too painful at the moment to disscuss... but a friend gave me the following story that i have found comfort in.

welcome to holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

for me... this story is sad.. but so very true.

good luck with ur friend... im guessing she will have roller coaster of emotions. hang in there with her. be her friend. she will remember you for ever if you r patient. you will do good. i will b thinking of you and your friends baby

The material on this website is provided for educational purposes only and is not to be used for medical advice, diagnosis, or treatment, or in place of therapy or medical care. Use of this site is subject to our terms of use and privacy policy

Advertising Notice

This Site and third parties who place advertisements on this Site may collect and use information about your visits to this Site and other websites in order to provide advertisements about goods and services of interest to you. If you would like to obtain more information about these advertising practices and to make choices about online behavioral advertising, please click here